Thursday, February 23, 2012

My friend, Michael Sieverts, is a 10-year brain cancer survivor, a highly respected patient advocate, and a qi gong instructor for the Cancer Support Community. He is exceptionally well-read on the topics of brain health and cancer-related cognitive decline. ID

Michael Sieverts

By Michael Sieverts

This is a handout for the “Chemobrain” panel I moderated on February 21st at the Cancer Support Community-Benjamin Center. From my introduction that evening:

This is an incredibly important moment in the history of cancer treatment, and we appear to be at an inflection point in terms of understanding the multitude of diseases we refer to collectively as cancer. A good deal of the excitement has to do with scientific

breakthroughs in new imaging refinements, a greater understanding of genetics and the merging of math, chemistry, biology and physics. Young scientists aren’t staying in one discipline any more, instead they take up careers such as, “computational biologist,” and collaborate across disciplines.

But the other area of enormous progress, which is emerging as we speak, is the voice of the patient—our voice. As medicine becomes more collaborative, as we access our own information on the web and through other sources, and as we start talking to EACH OTHER and acquiring a collective intelligence, we have within our grasp the tools to take the entire enterprise to a whole different level.

This is not merely consistent with the mission of the Cancer Support Community—it IS the mission: that by becoming an active participant in your fight for recovery, along with your healthcare team, you’ll have a better quality of life.

One thing that’s important to keep in mind is that THIS IS A NICE PROBLEM TO HAVE—because by definition, having chemo brain is an indication that you’re alive. This is not a small victory, considering how many of us are here tonight despite having illnesses that not so long ago were characterized as “invariably fatal.” What a luxury, at one level, to have the focus shift from “how do I stay alive” to “how do I have a good quality of life?”

Michael’s Tips and Tricks to Recover Your Life

Even though these tips and tricks are divided into categories, there are actually no real divisions. When you go to a support group, for example, you acquire important and relevant medical information about your illness. When you go to an exercise class, you get support from the other class members and improve your cognition. When you meditate, you gain calmness and increase your focus. And so on.

If I had to limit myself to one sentence of advice, I’d be hard-pressed. But here goes: pay close, moment-to-moment nonjudgmental attention to what’s happening in you and around you, get and stay healthy, get support, claim your strengths without obsessing about what you perceive as your failings, and be grateful and peaceful whenever you can manage it.

I highly encourage you to seek out people to support you in the process, people who have gone through what you’re going through—their advice and support is invaluable. If your illness is so obscure or rare that you can’t find other survivors locally, use the Internet to locate others—just about every disease has its own community at this point. That’s how you’re going to find the right treatments and right doctors—the good doctors get better results.

Techniques to Build Cognition:

● Build your memory: challenge your brain by learning a new language or a musical instrument. Doing crosswords and Sudoku are fine, but the skills involved don’t seem to translate to tackling other kinds of tasks.

● Be actively involved in your medical treatment. Research and understand your illness—become a partner in your recovery with your medical team, stay current on advances in the field, join the e-patient movement.

● Research which parts of your brain are not functioning well, because that will inform you about where to direct your recovery effort.

● Find the best doctors for your specific illness, and then make them look like geniuses by having the best recovery possible.

● Stay present. Remind yourself to focus. Learn to meditate, and to pause before you take an action.

● Prioritize. Don’t think that you can multitask and perform. Do fewer things and do them well. What you decide not to do might be as important as what you actually decide to do.

● Develop routines. Keep the same daily schedule as much as possible. Prepare for the day the night before by reviewing your calendar. Exercise and eat at regular times, use a divided pillbox to remind you to take your medications properly.

● Rehearse. “Repeat to remember” to improve short-term memory, “remember to repeat” for longer term memory.

● Tell yourself stories about the person you just met. Say the name out loud, ask them to spell it, remark on the similarities to a celebrity’s name, or to someone else you know with the same name.

● Use word associations and rhyming. This increases the impact of a name or address on memory.

● Cue the senses.

● Break numbers into chunks.

● Don’t use scratch paper. Instead use a single notebook.

● Use a paper daily planner to write down all your activities, even movies and chores—and remember to look at it. You remember things better when you write them by hand than if you type them on a keyboard.

● Use your planner to keep track of your memory problems and other symptoms, so you can discuss changes in your condition with your doctor, who’s going to want to know what happened and when. Do not ignore symptoms, regard them as a blessing, if they lead you to solving a problem earlier than later.

● Everything in its place. Always put keys, checkbook, cell phone and wallet in exactly the same places. Start regarding your purse or backpack as a system.

● Chew gum, yawn—increases oxygen flow to the brain.

● Retain a sense of humor—it’s lighter than you think. Self-forgiveness is an important way to “get over it.”

● Sometimes something that seems terrible can be viewed from a different angle, and regarded as not only not so serious, but maybe as a benefit—and possibly as a great benefit.

Manage your technology:

● Use email to make a data trail of conversations and commitments, and ask family and friends to sign on too to this method of communicating.

● If you have a task to accomplish, don’t respond to every email as it comes in—look at them and respond to them in batches.

● Manage the phone—don’t answer unless you know who it is and it’s someone you want to talk to at that moment. Use anonymous call blocking, caller ID, and an answering machine to screen calls.

● Minimize television viewing, especially TV news.

● Don’t expect a smart phone to replace a computer—it’s too hard to read attachments on a phone, you don’t retain the information the same way.

● Use your computer’s alarm functions to remind you to do certain tasks—moving the car for street cleaning, for example, or picking up kids.

There are many forms of meditation, and choosing one over the other is a matter of personal preference. I happen to like mindfulness-based meditation, as promulgated by Jon Kabat-Zinn—the tone of his advice is just right for me and many others, but it might not be for you, you might prefer a meditation technique that utilizes a mantra, like Transcendental Meditation, or any of the other forms. No matter—you can use any one of them to deeply explore your consciousness.

The key thing to remember is that learning to be in the present, in the now, is both utterly simple and very challenging. It can take a lifetime to learn. Even the Dalai Lama says that he’s still learning.

There’s a reason they call it a practice:

When we are giving ourselves the experience of being relaxed, calm, alert and objective, we are practicing and perfecting mindfulness. When we are being tense or angry or anxious, we are practicing and perfecting being those states as well—BUT, if we are observing that we are going to those places while we’re doing it, we have the opportunity to take ourselves back to the relaxed place. It’s ultimately about cultivating an inner strength.

I’ve heard the distinction made between prayer and mediation is that when you pray you’re talking, you’re asking for something—and when you meditate you’re just listening. Some people call it “falling awake.”

There’s a huge body of literature, and courses offered everywhere, many for free.

You can study in classes, and go on retreats, which are great, but ultimately the idea is to be able to live your whole life with a mindful aspect. As my teacher says, “lead an ordinary life and make changes from within that life.”

Properly done to avoid depletion and injury, exercise is one of the best things you can do for your cognition. Early human brains developed in almost continuous motion, hunting and gathering food, walking vast distances daily. Only recently have we become physically idle.

All exercise increases blood flow and oxygen levels. Increased oxygen to the brain is associated with improved cognitive function. Exercise rids the body of stress chemicals, and boosts brain power. It cuts the risk of dementia in half.

My observation is that the healthier you are, the easier it is to survive the treatments. If you have the “luxury” knowing that a treatment or procedure is imminent (as opposed to requiring an emergency surgery), prepare yourself by getting as strong as possible. Train as if you’re training for a triathalon, you’ll need all the strength you can muster.

Your regular exercise:

● Exercise daily, but not necessarily vigorously—at least 30 minutes, out in natural light and fresh air when feasible.

● Power walking, swinging light weights in your hands to involve your upper body, is a great way to get exercise. Human brains evolved as we walked great distances, and it remains the best all-round exercise.

● Gentle yoga, Feldenkrais, Qi Gong—explore to find the ones that work best for you.

● Any exercise that makes you feel light—that’s the right one for you.

● Avoid exercise that depletes you, which is bad for your immune system.

Sleep:

Sleep is incredibly important, for cognition, for the immune system, for mood and happiness, so develop good sleep hygiene. Avoid going deep into sleep debt—accumulating consecutive nights of short sleep. “You can’t be healthy if you’re not getting good sleep”:

● Go to bed at a regular time, preferably before 11pm.

● Avoid stimulating activity for the few hours before bed, prepare.

● Avoid eating before going to bed.

● Don’t watch television, or work on a computer in bed.

● Use relaxation techniques to help yourself fall asleep.

● Use the bedroom only for sleeping and sex, not for eating or working.

● Keep the bedroom dark—light interferes with the functioning of your pineal gland.

● If you are occasionally unable to sleep, don’t stress about it, get up for a little while and do something else, preferably not too stimulating.

● If you feel drowsiness, be extremely careful, you literally could fall asleep in a heartbeat—do not drive!

Eating should be a source of pleasure. The reality is that we’re omnivores, and people have been thriving on a wide variety of diets for millenia. Michael Pollan says that the field of nutrition today is like the field of surgery in 1650—promising, and interesting to watch, but not yet deserving of our total trust. The popular press has made a total hash of the field of nutrition by using the latest headlines to sell papers— findings which gyrate wildly. Margarine, fats, carbohydrates, —sometimes they are the villains, causing all sorts of health problems—then they regain or fall out of favor. And the government is under the sway of the agriculture and food lobbyists; federal dietary guidelines and recommendations are compromised and getting worse.

But don’t stress too much, it’s not difficult to make good food decisions, especially now. Make sure to enjoy yourself, to make eating a pleasurable, slow, and social, function. Follow some simple guidelines, and use your self-awareness to inform you whether what you’re choosing to eat is helping you or causing you setbacks.

Whenever feasible, do your own cooking with organic, local, seasonal, sustainable fruits and vegetables. (Support farmers and the local economy with your money—you are voting for a healthful food system.) Not only can you control the ingredients and the cooking methods, but you are taking an active role in your fight for recovery. Plus you will save money by not eating out. It’s estimated that as much of 2/3 of the cost of medical care in this country is attributable to our poor eating habits. Cooking is a profound way to influence your health: “The best public health tools are a sharp chef’s knife, two cutting boards and a salad spinner.” (Preston Maring, MD, associate physician-in-chief at Kaiser Permanente Oakland)

Restrict wheat, dairy and try to eliminate sugar—but aim for “90-10”: allow yourself some small indulgences to retain feelings of pleasure, since mood affects how you digest. A happily-enjoyed burger is probably providing better-absorbed nutrients than an organic raw kale salad that you are forcing down. Savor what you eat.

Other rules:

● Don’t eat food that comes through your car window.

● Read labels-- avoid foods with sugar (or sugar equivalent) as one of the first 3 ingredients.

● Avoid food with more than 5 ingredients, or made with ingredients you wouldn’t plausibly have in your pantry.

● Junk food is fine if you make it yourself. If you had to clean up after every batch of French fries, you’d rarely make them.

● Get the best ingredients, from farmers if possible. If you shop in supermarkets, buy only on the perimeter—it’s where they put the freshest food.

● Eat until you are satisfied, not full.

● Don’t feel like you have to finish what’s on your plate.

● Don’t go back for seconds.

● Spend more on ingredients, but eat less.

● Transparency is important—don’t buy from vendors who are secretive about where their food comes from.

● Local non-organic is better than organic from long distances—foreign agricultural practices are unregulated.

● Eat food in season—it tastes better, has traveled less.

● Eat a rainbow of plant foods—the phytonutrients in the colors are very healthful.

Last but not least: the goal is not to live forever, nor to return to an old place, but rather to transform ourselves into healthy people, utterly at peace with ourselves, our families and our friends. Create a tradition of peacefulness:

Any exercise, but qi gong especially, increases the circulation of your blood and qi. When you exercise, a feeling comes out that helps you, but you shouldn’t exercise to the point of depletion.

Qi gong works for most people, because it doesn’t require strength, unlike many forms of exercise. It’s very relaxed, very soft. Your mind has to be relaxed, and using very soft exercise helps you relax even more. The more you do it, the more relaxed your heart will become. Then your body becomes more relaxed. It becomes a spiral leading to ever-deeper levels of relaxation.

In qi gong, your mind and body work together. You also are working with your universe, your environment, and the people who surround you. When that happens you feel very lucky, and the luck follows you everywhere.

We often find ourselves in toxic environments, but you don’t have to go into that state. You can’t allow your environment to throw you off.

Put your heart inside your own body.

Don’t let your mind wander. For example, when a little child eats rice, his attention may wander and as he’s looking around, not focusing on eating, he may choke. Sometimes you choke, because you weren’t paying attention to the process, and you didn’t notice that you had already become full.

When I practice, it feels like I’m sleeping, I’m not aware of what I’m doing, I don’t care. When I’m in that condition, I’m not caring, I’m separated from what’s going on, I’m looking around but not reacting to anything, and I’m numb to whatever I’m seeing. Going into that state, numb to the outside, inside empty, not thinking about what you’re going to do later—that is the practice.

This philosophy, which encourages no wanting and no desire, will help you get deeper and more accomplished in your practice. When you get to that state of qi gong, which is the feeling of floating in space, you won’t get tired.

(many many thanks to the wonderful Xiaojun Sun, whose remarkable translating opens up this universe to me-- I'm so blessed to have her friendship and wise counsel.)

So, Anon, was that helpful?

(By the way, I don't think the qi gong forms are the only way to go-- you could potentially use many other exercise disciplines to reach that relaxed, floating state.)